On 11th October this year, we are flying to Marrakech to take part in the 5-day Saharan Challenge from the Draa Valley to the Nakhla Dunes. Along with 23 others, we are trekking for our daughters and friends’ daughters with Rett Syndrome. 

A double marathon (52 miles / 84km) over two days in 35 degree heat won’t be easy, but we know how lucky we are to even be able to contemplate doing something like this when we see our daughters struggle to breathe, eat, stand and use their hands every day.

Kim is now 8 and Eliza is 11. They should be playing with friends, going to sleepovers and having fun. Instead, they can’t talk or communicate effectively, suffer with epilepsy and need 1:1 support at all times, to do even the simplest tasks. Eliza learnt to walk at the age of 5 but she is losing this ability. Kim is able to stand and take a step or two with support, but no more.

They developed normally as babies and it was a devastating shock to receive their diagnoses … Eliza’s in 2014 at the age of 3 and Kim’s in 2015 at the age of 2. It’s hard to put into words how it feels when you hear that your child’s future is going to be so difficult … and so different from what you imagined and hoped for them. 

We both live in Scotland (Glasgow and North Berwick) and met each other through Reverse Rett - we are also now both board members. We have become friends, supported each other and are excited to be in the position to do a challenge together. It involves a lot of training and we will be away from home for 7 days, which is not easy with everything that has to be coordinated for Kim and Eliza’s care (thanks to Scott and Ross for their support!)

Reverse Rett fund research into treatments that would make our girls’ lives easier - helping them to move more freely, breathe and use their hands. Gene therapy could also bring back their voices and help them to walk again. 

Please help us reach our fundraising target. Any donation you can spare would be amazing - thank you for your support.

Catherine, Kate, Eliza and Kim xxx